My “Summer Vacation”

What I’ve done on my “summer vacation” has not been fun. I’ve had a rough couple of months. Non-ME health issues have gobbled up most of my capacity, and I’m still feeling the repercussions.

I’m not ready to talk about the details of those new health problems, but I can say that I am doing ok now. It’s been a physical and emotional roller coaster. Dealing with these problems has also consumed a great deal of healthcare resources, as well as physical and emotional support from our family and friends.

With so much energy going towards day to day survival, the blog has suffered. So has my activism. I’ve been unavailable for advocacy projects, and I also had to withdraw from the NIH’s Common Data Elements project. I’ve also been forced to delay two large projects that I thought would be my focus in 2017. And I have not kept up with my friends the way I usually do.

But it is what it is. Here are some things I learned this summer that have helped me. Your mileage may vary, of course.

Don’t assume everything is ME. For many years, ME was my only health problem. But additional diseases are basically inevitable as we get older. If you have new symptoms, discuss it with your healthcare provider. Don’t dismiss it as a weird ME thing or complication. Sometimes, those symptoms indicate a new condition, and a careful diagnosis should be made.

Keep up with preventive care and monitoring. Are you getting your mammograms, colonoscopies, pelvic exams, etc? If your doctor recommends regular testing for a condition, keep up with that testing. Even if you feel fine, even if other things are going on, even if you are sick of going to the doctor, keep up with your regular testing schedule.

Don’t assume your non-ME expert healthcare team will dismiss or disparage your ME. I’ve interacted with a number of new doctors this summer, and I expected them to ignore my ME and the way it might affect my treatment. I was wrong. Every doctor and nurse took my concerns seriously. One doctor has been especially attentive to the impact of the new health issue on my ME, and has proactively discussed how we can take that into account.

You’re gonna need help. Getting evaluated and treated for my new health issue has been an enormous drain. Spending spoons on extra appointments meant that there were fewer spoons available for every day tasks like ordering groceries, cooking, and managing errands. Since my husband is disabled as well, there was no one in the house to pick up the slack. I tend to resist asking for help, but we really had no choice this summer. So I got over myself and asked our family and friends. They stocked our freezer with meals for weeks. They came to the house to help us out. And they showed up for us emotionally, too. We would have really struggled without their support.

Triage your life. When a person is brought to the emergency room, a nurse does triage: are you breathing? do you have a pulse? are you bleeding? are you in pain? I’ve been applying the same kind of approach to my life by starting with the most essential questions. Do we have food? Does the dog need to go out? Are the bills up to date? Do we have clean clothes? What doctors are we seeing this week? First, I go through those essential questions and deal with any tasks. Only then do I move on to the next level of tasks or activities. That way, when my energy is completely used up, at least I know that the most essential needs have been addressed.

Self-care is non-negotiable. Keeping a positive frame of mind when your life resembles a dumpster fire is, obviously, quite a challenge. But I learned this summer that self-care is mandatory when you are dealing with a tidal wave of bad news and challenges. Everyone’s self-care is different. For me, it is playing the cello and knitting. I know people who give themselves manicures, binge watch trash tv, or sit on the porch with a book. Do whatever helps you relax. My goal has been to ride the tidal wave without sniping at people, complaining incessantly, or feeling sorry for myself. Some days, I have even managed it!

Be patient. This has been a shitty summer, and it caps off a really shitty two-plus years. I was catching up with a friend the other day, and every time she said “That’s horrible!” I would say, “I’m not done yet!” It’s been ridiculous, but it is also temporary. The one thing I know for sure is that things will change. Maybe for better, maybe for worse. Some challenges might be met and mastered, and new ones may arise. But it’s also possible that we will get a break, and have some time when nothing new goes wrong. I’m not in control of life. None of us are.

This summer has taught me that I can only do my best each day, and hope for better times.

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Funding Unrest

Photo courtesy of Unrest

Four years ago, I wrote that Jen Brea’s film, then titled Canary In A Coal Mine, could be a defining moment in ME advocacy. Today, we stand on the threshold of a watershed moment for our disease, and Jen is asking for our help.

Jen finished her film, now titled Unrest (here’s the trailer), and it is very very good. The film has won awards at Sundance, River Run, Nashville Film Festival, and the Sheffield Doc/Fest. Not only that, but the film will be released in select theaters this fall. AND the film will also air on PBS Independent Lens in January 2018.

Think about that for a minute: a film about ME is winning awards, will air in theaters and will be shown on PBS. As an ME activist for close to twenty years, I can honestly say that I have only dreamed of this kind of publicity.

Back in October 2013, I was impressed by Jen’s approach to storytelling. I wrote:

What makes people want to support this film is the intimate connection with Brea and others featured in it. It’s the story that pulls you in, and the story that makes you want to do something to help. If that’s true of the Kickstarter, it can be true of the film. And that could be a defining moment. We’ve longed for and dreamed of widespread public attention to the realities of having ME/CFS. Canary In A Coal Mine could deliver. . . . I would like to believe that the galvanization of our movement is at hand: that our story will be HEARD and SEEN. I would like to believe that change is coming.

That moment is here.

In conjunction with the film’s theatrical release, Jen and her team are launching #TimeforUnrest. This is an impact campaign to mobilize the public, educate health care providers, and inspire new researchers to enter the field.

Ambitious? Yes. Possible? Given Jen’s track record so far, absolutely! Over the past four years, Jen has repeatedly demonstrated her commitment to high quality work, and informed, action-oriented activism.

Here’s what you can do: check out the Kickstarter campaign and donate if you can. Whether you are able to contribute money or not, spread the word to your family and friends. There are 13 days left to go, and a little over $40,000 to raise (as of August 12th at 12 pm).

We helped Jen make this film. She leveraged our resources to get support from many many others. Now she is offering us not only a great film, but the structure to leverage the film into the social change we need so desperately.

I want everyone to see Unrest, but I especially want health care providers to see it. I want people who doubt the reality of ME to see it. I want a wave of public compassion and commitment to action to crash down on NIH and force a meaningful, sustained response to this public health crisis.

I’ve been sick for almost 23 years, and I have come to recognize that I will never regain much more function than I currently have. My activism is now about forcing change so that someone who has just fallen ill will not be sentenced to a life of being unable to fulfill one’s full potential. This is our moment. It’s time for unrest.


Disclosure: I am a financial backer of both the film Kickstarter and the current #TimeforUnrest Kickstarter. I was also interviewed for the film.

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Those CDC Documents

Last month, I wrote about CDC wanting to charge me over $200 for documents I had requested under the Freedom of Information Act. I was looking for information on how much CDC had spent on the Institute of Medicine (now National Academy of Medicine) contract to devise new diagnostic criteria for ME/CFS.

As I wrote then, I did not have the resources to invest in getting the documents from CDC. However, after I wrote my post, the Solve ME/CFS Initiative offered to cover the costs of obtaining the documents from CDC. Thanks to SMCI, I can now report the results.

CDC identified 760 pages of documents responsive to my request. They released 201 pages to me, with very few redactions. The other 559 pages were sent to the main HHS FOIA office for their review prior to release. When this has happened in my previous requests, it usually indicates that the ownership or authorship of the documents resides at HHS.

The documents I received to date reveal that Dr. Nancy Lee (then from the Office of Women’s Health, and Designated Federal Officer of the CFS Advisory Committee) had originally asked CDC to issue the IOM contract under its standing contract with the Institute. In an email from August 14, 2013, she said, “”If CDC can get this thru for us, we owe you big!”

Not everyone at CDC was happy about it though. Dr. Steve Monroe, who at the time was deputy director of the National Center for Emerging and Zoonotic Infectious Diseases at CDC, wrote to other colleagues in leadership at the Center on August 14th. Explaining the proposed contracting arrangement, Dr. Monroe said, “Bottom line: we didn’t volunteer to play this role. . . . are ‘we’ willing to use our time/energy/chits to push this through at the 11th hour? . . . it would be nice if program could get something for their efforts.”

Through the month of August, there were many emails among CDC employees as they worked through the red tape to issue the contract. There are several places in those emails that reference “the Secretary,” such as, “the Secretary is requesting this study.” That suggests the possibility that the decision to commission the IOM study came from the very top – Secretary Sebelius.

CDC employees pushed the contract through their system, obtaining approvals from a variety of offices. But on September 3rd, Caira Woods from the Office of Women’s Health notified CDC that the IOM contract would be accomplished another way, and CDC’s help was no longer needed.

This chain of events is a little odd when viewed in the full context of the IOM contract controversy. The Office of the Assistant Secretary issued a notice of intent to award a sole source contract to IOM for the diagnostic criteria project on August 27th while CDC was still processing the request internally. Advocates found the notice, and it ignited a massive effort to protest the contract because it was being done without our knowledge or input. Woods called CDC to cancel that effort on September 3rd, but then on September 4th, the solicitation for the sole source contract was also withdrawn.

By September 17th, we knew that the IOM contract was going forward despite our mobilization against it. On September 23rd, the Office of Women’s Health announced that the contract had been signed. When I obtained the Statement of Work on September 30th, it became clear that OASH had turned to NIH to issue the contract through its umbrella arrangement with IOM. How and why that decision was made is still unclear to me. We may never get the documents that explain what really went on behind the scenes.

I started on this line of inquiry back in March 2014 with a very simple question: who paid for the IOM study? The Frequently Asked Questions document published by CFSAC stated that “almost all the agencies” contributed to the study. Through a number of FOIA requests, I’ve assembled the following totals:

Agency for Healthcare Research and Quality $100,000
Centers for Disease Control $150,000
Center for Medicare and Medicaid Services $0
Food and Drug Administration $150,000
Human Resources and Services Administration $0
National Institutes of Health $100,000
Social Security Administration $50,000
TOTAL: $550,000

The IOM contract totaled $1 million, so I assume that the remaining $450,000 was covered by the Office of the Assistant Secretary, but I do not yet have any documentation to prove that. But if OASH was not the source of that $450,000, then who was?

There is one other mystery: what is in the 559 pages that CDC referred to the main HHS FOIA office for review prior to release?


My thanks to Carol Head and SMCI for making it possible for me to obtain these documents from CDC.

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Grant Review

Disclosure: I participated in the preparation of one of the Collaborative Research Center applications.

Today and tomorrow, the applications for ME/CFS Collaborative Research Centers and Data Coordinating Center are undergoing peer review at NIH. It’s a very important stage in the decision making process, and competition is tight.

If you look at the roster for the review panel, you will undoubtedly recognize some names. There are nine ME experts on the panel, out of twenty-six total members. Because there is a great deal of overlap among ME experts, I reported on NIH’s management of potential conflicts of interest in grant review.

Peer review is incredibly important at NIH. The review panel is comprised of scientists with relevant expertise. They score the applications on a variety of criteria, and come up with an overall impact score “to reflect their assessment of the likelihood for the project to exert a sustained, powerful influence on the research field(s) involved.” The final calculated score ranges between 10 and 90, with 10 being the best possible score. Applicants can access their scores three days after the meeting, or no later than August 1st in this case. Summary statements, which include reviewer comments, are available about thirty days after the meeting.

But the scores are not the end of the process. The rest of the decision making happens within NIH. Program staff prepare funding recommendations based on scores, comments, and the Institutes’ overall research priorities. Those recommendations are presented to the Institute Advisory Councils, which review the material in light of the Institutes’ goals and needs. The Council recommendations go to the Institute Director, who makes the ultimate decision on which grants are funded.

The Council stage in our case is a little complicated. There are ten Institutes contributing money to the RFAs, but it seems unwieldy to present recommendations to all ten Councils. NINDS is listed first on both RFAs, and Dr. Vicky Whittemore is the research point of contact, so I am assuming that NINDS Council and Director will be presented with the recommendations. However, NIAID is contributing the same amount of money as NINDS ($2 million per year for five years), so it is possible that NIAID Council will also be consulted.

The dates of the Council meetings are important to note because it creates a very tight deadline. The NINDS Council meeting is September 7-8th. The NIAID Council meeting is on September 11th. Final award decisions must be made immediately afterwards because the fiscal year ends on September 30th. Dr. Whittemore has said that they hope to get Notice of Award letters out before that date.

There is one more item, tucked almost out of notice. Another meeting of the CFS Special Emphasis Panel will be held on July 31st. I can only assume that this group will review applications submitted under the general funding opportunity, and not under the RFAs.

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 10 Comments

Pediatric Primer Not For Prime Time

Guest post by Denise Lopez-Majano

Young people with ME face huge difficulty in finding knowledgeable healthcare providers because there is only one full-time pediatric ME specialist in the United States, and he is unable to take on any more patients.

So I was very hopeful that the new pediatric primer – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer – would better equip pediatricians to diagnose and help young patients with ME. After all, the primer’s authors include most of the world’s pediatric ME specialists, each of whom have decades of experience and insight regarding ME.

Unfortunately, for a number of reasons, I do not think the pediatric primer is ready for prime time.

There are some things the primer does very well:

  • The Etiology and Pathophysiology section is very thorough and clearly states this is a multisystem physical disease.
  • The primer addresses the differences between ME and factitious disorders, pervasive refusal syndrome, school refusal, and somatoform disorder. This is critically important given the number of young patients who have been referred to social services or even removed from the home.
  • The “Pediatric ME/CFS Diagnostic Worksheet” ensures that frequency and severity of symptoms is recorded.
  • Table 5, “Symptom comparison between depression/anxiety disorders and ME/CFS in children and adolescents,” clearly shows the differences between ME and depression/anxiety disorders.
  • The section on the very severely ill has good suggestions to help make hospitalization easier.

However, there are serious flaws and deficits in the primer that must be corrected before it receives broad distribution.

First of all, the primer uses problematic language to describe people with ME:

  • “Severely ill young patients are often difficult to manage….” (p.24) This statement is completely inappropriate. It is NOT the patient who is difficult to manage. It is the disease that is difficult to manage.
  • The section on “Very Severely Affected Patients”states “These patients are fortunately, relatively rare.” (p.24) The truth is we do not know how prevalent they are. Severely ill patients may be less likely to go to pediatricians or participate in the very few pediatric studies conducted to date. There have been no prevalence studies in pediatric patients. Until we have good data, no one can know the prevalence of severely or very severely affected patients.
  • “A child or adolescent affected with ME/CFS presents challenges for the entire family.” (p.26) Again, the patient is not a challenge, and should not be made to feel this way. The disease is a challenge, not the child afflicted with it.
  • “A patient’s needs early in the illness might differ from her/his needs in later years, as health improvement is being achieved.” (p.17) This implies that all patients improve, and ignores those who do not. Claiming that all patients improve could have a negative effect on those who don’t, especially in the context of working with pediatricians not expert in ME.

Second, the primer presents confusing and mixed messaging on the diagnostic criteria for ME:

  • The suggested diagnostic criteria do not match any existing case definition. Instead, the authors base their criteria “on their collective experience and insight.” (p. 6) While the authors’ collective experience is incredibly valuable, creating yet another set of diagnostic criteria only adds to the existing confusion we already face.
  • Furthermore, the core symptoms listed on page 6 differ from those in the fact sheet about ME (p.35). These inconsistencies will make it virtually impossible for non-expert pediatricians to accurately diagnose ME.
  • Too many terms are used for what happens when patients exceed their activity levels and they are worse off than usual: post-exertional worsening of symptoms, post-exertional malaise, post-exertional collapse, post-exertional relapse, post-exertional flare-up, post-exertional symptom exacerbation, post-exertional exacerbation, symptom flare-up, crash, etc. In fact, the section on “Fatigue, Post-exertional Symptoms, Exercise Intolerance” (p.15) does not even use a name for this cardinal feature of ME. The authors need to decide on and use one name consistently to emphasize the significance of this cardinal symptom of ME.
  • The primer discusses a number of the case definitions currently in use, but then dedicates an appendix to the Fukuda definition. Detailing Fukuda in its own appendix perpetuates its inappropriate use. This is harmful because Fukuda does not require post-exertional worsening of symptoms, even though this worsening is part of the core criteria in the primer. The authors even acknowledge that Fukuda “can exclude some young patients with ME/CFS and include others, who are later found to have another illness.” (p.6) Why these distinguished authors would highlight Fukuda over other case definitions, despite the flaws they point out, is a mystery to me.

Third, improvements are needed in the discussions of educational and social issues:

  • The section on severely affected patients (pp. 24-25) should discuss the importance of trying to develop/maintain social connections. It should also emphasize that while pediatricians should feel there is reason to hope for improvement, they should never lay the blame on patients who don’t improve.
  • There should be greater emphasis on cognitive exertion as a possible cause of the worsening of physical and cognitive symptoms. It needs to be made very clear that this disease imposes cognitive limits that vary greatly from day to day, and from patient to patient, and cognitive exertion can impact a patient just as much as any physical exertion.
  • It should be emphasized that, for those able to continue schooling, educational courses must be at the student’s intellectual level. It should also be stressed that even though providing these accommodations may be more challenging for schools than putting the student in a class they could more easily pass, doing so would be intellectually frustrating for the young patient.
  • The primer states that “education is a key issue that improves their ability to function regardless of whether or not they recover.” (p.26) I agree that education is critically important, but there are scarce data actually showing that education improves functional outcomes.
  • “IQ scores might be lower than the scores of healthy peers.” (p.27) Properly administered tests will show that scores are artificially low because of impaired processing speed and impaired working memory, etc. Pediatricians (and others) should not be led to believe that the young patients have lower IQs or are less intelligent that their peers. The intelligence is still there; the ability to perform tasks at the same speed or in the same way as others is the problem.

We all want this disease to be taken seriously by pediatricians, and we desperately need more pediatricians who can help young people with ME. As much as I want to share the primer far and wide, I am reluctant to do so in its current form. The primer does not convey consistent information clearly enough to help pediatricians understand this disease and its impact. Don’t get me wrong. I truly appreciate the work of the primer authors. But I think the primer wasn’t ready for publication. I hope there is a revised version soon, so we can truly equip pediatricians to diagnose and manage ME in young patients.

Note: Comments are closed as of August 13, 2017 due to a large number of spam comments.

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Best In Show Blog

I am excited to announce that for the third time, Occupy ME has been nominated for the Best In Show Blog award in the WEGO Health Awards!

Now we enter the part of the process where you can influence the outcome!

WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. WEGO says that this is the world’s largest network of patient leaders, working across almost all health conditions.

The WEGO Health Awards were created to celebrate and empower the patient voice. There are sixteen award categories, and these are the only awards across all conditions and platforms. The idea is to recognize the patient leaders who raise awareness, share information, and support their communities.

Giving voice to what it is like to live with ME is why I started my blog five years ago. Since then, we have witnessed an explosion in ME activism and storytelling. My goal is to support your activism with insider information, analysis, and action. I give you my opinion, and I have also hosted a number of guest posts so that you can hear from your fellow advocates. Occupy ME is about speaking truth to power, and empowering ourselves.

I am honored to be nominated for the third time! I was a nominee in 2015 and a finalist in 2014. Now I hope you will help endorse me for the Best In Show Blog award. The top three nominees with the most endorsements will become finalists, and two additional finalists will be selected by the judges. Here’s how you can help:

Click here to go to my WEGO Health Awards profile and click endorse under my photo. Voting is open until September 1st, and the winners will be announced in mid-October.

So if you like what I do here at Occupy ME, or if you have ever used my writing in your own advocacy, please endorse me for the award. And while you are at it, endorse Tom Kindlon for Best in Show: Twitter. This is all about raising the profile of ME in health advocacy!

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NIH Attitudes Affect Policy: A Story In Two Parts

The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to catalyze research and how NIH attitudes about ME are interfering with that. There is a toxic stereotype in play: that people with ME are responsible for the current situation. I believe that as long as that stereotype is held by people in positions of power, we face a slow and uphill battle to obtain the research funding that is so desperately needed.

Part One: You Have Disappointed Me

In November 2016, Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative secured a brief meeting with NIH Director Dr. Francis Collins. They reported that it was a positive discussion, but emails I obtained through a Freedom of Information Act request reveal NIH’s intention to manipulate the encounter.

This meeting with Dr. Collins occurred in the immediate aftermath of Dr. Edward Shorter’s controversial talk at NIH. The ME/CFS community had expressed outrage after learning that NIH had invited Dr. Shorter, because he espouses the disproven psychosocial theory of ME and demeaning views of people with the disease. The talk proceeded over our objections, and all sides were still smarting from the controversy when SMCI met with Dr. Collins.

The emails show that Dr. Koroshetz, Director of the NINDS and Chair of the Trans-NIH ME/CFS Working Group, was angry about the controversy. In responding to Dr. Collins’s request for updated information on the RFA and intramural study, Dr. Koroshetz wrote:

I was pretty upset with Solve ME/CFS for making such a huge fuss over the seminar at NIH by the historian from Canada. If you can impress upon Carol and Zaher the importance of Solve ME/CFS joining with the research effort and not inciting mistrust at every twist and turn that would be helpful. Mainly I am worried that researchers will shy away from studying ME/CFS if they are subject to one attack after another due to the strong biases that are out there. Funding could be for naught.

This email blew my mind because it is loaded with . . . I was going to say inaccuracies, but that is too mild a term. First of all, SMCI did not “incite mistrust.” NIH did that all by themselves when they extended the invitation to Dr. Shorter and then offered only a vague not-quite-an-apology. Second, Koroshetz is perpetuating the myth that no one will want to study ME if they are “attacked.” I guess that’s why no one studies autism or HIV/AIDS, because those activists are pretty rowdy. And the “strong biases that are out there are best described as PACE-Gate and the psychosocial theory of ME. Perhaps Dr. Koroshetz and others should be more concerned about the biases and attacks directed at people with ME, instead of biases held by people with ME.

Dr. Collins did not immediately buy Koroshetz’s take on the controversy. He responded:

Walter and Vicki, did Solve ME/CFS specifically stir up trouble for Dr. Shorter? I got a bunch of e-mails about this from ME/CFS advocates, but didn’t see Solve ME/CFS fingerprints on there. I certainly agree that this kind of behavior is counterproductive to the collaborative effort we are trying to create.

When other disease groups protest disproven, antiquated and misogynist views that interfere with scientific research, how is that perceived? Are they “stirring up trouble”? Are they being “counterproductive”? As I said last November, it is unthinkable that NIH would offer a platform to someone who spoke about people with HIV/AIDS the way Shorter talks about people with ME. Yet NIH seems to think that we are the problem, and if no one wants to research our disease then we just have ourselves to blame.

In response to Dr. Collins’s question, Dr. Vicky Whittemore forwarded him (without comment) SMCI’s November 7th email asking advocates to denounce the Shorter invitation. That email actually asked advocates to contact members of Congress, by the way, not NIH. Advocates had started emailing NIH on November 3rd. But Dr. Collins replies:

Got it. I will express our disappointment to the Solve ME/CFS leadership.

This email discussion between Collins and Koroshetz repeats multiple familiar talking points: ME activists should not have made a “huge fuss,” and now scientists will “shy away” from studying this disease because of “one attack after another due to the strong biases that are out there.” And therefore: “Funding could be for naught.” I know I am not the only person who is sick of this stereotype, but let’s review:

  1. It is appropriate to protest NIH’s invitation of a speaker whose views are not grounded in science, and who demeaned and denigrated both people with ME and the National Academy of Medicine.
  2. Researchers are not subject to “one attack after another.” This is a myth that has been grossly exaggerated and disproven on prior occasions.
  3. The “strong biases” that have been “counterproductive” are the outdated, disproven, and belittling views held by Dr. Shorter and other adherents to the psychosocial theory of ME/CFS.
  4. Research funding is not “for naught” unless that funding is wasted on previously disproven hypotheses.
  5. People with ME are not responsible for the lack of interest in ME research.  The blame lies with CDC for focusing on the symptom of chronic fatigue, instead of the disease of ME, and contributing to the false but dominant psychosocial narrative. The blame lies with NIH for refusing to take the steps necessary to attract and fund research for many years.

A circle with a sad face and the caption “Blame token; it’s your fault.”

I’ll speak up for the people in the back: THIS IS NOT OUR FAULT. But according to Drs. Koroshetz and Collins, it is. Thus, Dr. Collins promised to express NIH’s disappointment to SMCI.

I have a great deal of respect for Dr. Collins, but I am not sorry if I (or ME advocates) disappoint him. I am much more concerned about the disappointment that I and other people with ME must face each day that we have to live without appropriate diagnosis, care and treatment. I am more concerned about the disappointment of the ME research community that NIH will fund only two or three research centers, despite all the data that point to the need for much, much more. So if Dr. Collins or Dr. Koroshetz are disappointed by the way that people with ME are fighting for their lives, I can live with that.

But the problem is not whether Dr. Collins is disappointed in me, or anyone else. The problem is that real harm is caused by perpetuating the lie that people with ME are to blame for the sins of CDC and NIH.

Part Two: Bad Advocate, No Cookie

ME social media lit up earlier this month when Dr. Koroshetz said (on video) that ME research funding needed to be ten or twenty times its current level. That is a stunning admission from the Director of the National Institute of Neurological Diseases and Stroke, but the full context of his comments show the harm of blaming people with ME.

Dr. Koroshetz made these comments during his June 9, 2017 presentation to the Advisory Council for the NIH Director (beginning at 2:25:00 in this video). He began by describing NINDS’s efforts on ME/CFS, specifically the intramural study and the RFA for research centers. Dr. Ian Lipkin, who sits on the Advisory Council, said he was “not as excited about the investment in ME/CFS” because the center grants come down to about $800,000 per year in direct costs for research.

Dr. Koroshetz responded:

I think the goal was that this was not the solution but the seed to grow the research that could then come in through regular mechanisms or else to kind of add on centers so we can kind of move the field across. I think we could find three, three or four centers, that’s not gonna do it. We need probably twenty across the country.

A calculator reading “Not Enough” sits on a pile of money.

Understand what Dr. Koroshetz is saying here. He admits we need twenty centers, but that he’s only investing in the “seed to grow the research.” To Dr. Koroshetz and others, this seems like a reasonable strategy. The field is small and could not create twenty centers this year (although it could probably create ten). So by investing a smaller amount, NIH plants seeds that years down the line could grow into twenty centers.

The problem is that the reason the field is so small is because there has been no money in it for more than thirty years. The field is small because of the strong biases against people with ME and the researchers who work on it. NIH helped create this situation through grossly inadequate funding and past grant review panels comprised of non-ME experts. Now that it admits the need, NIH should be thinking creatively on how to solve this problem quickly. At the current pace, it will be decades before this poorly funded “seed” will produce fruit.

Dr. Lipkin then raised the issue of the small amount of funding offered by the RFA collaborative center grant:

Dr. Lipkin: But $800,000 for a center [after administrative and collaborative costs] is – it’s a challenge. . . . it’s far less than a R-01 for each of the investigators. I just – it’s a problem.

Dr. Koroshetz: No one ever comes to me and said they gave me too much money. (laughs) But I think you’re right, we’ve gotta move this field it’s gonna take a lot of money. The budget’s gonna have to be ten or twenty times what it is now.

This is a remarkable statement. I don’t think we have ever heard such a public and specific admission by NIH that their ME funding is falling so far short of what is needed. From the context of his statements, it appears Dr. Koroshetz means ten to twenty times the present RFA budget of $6 million per year. That translates to $60 to 120 million per year, at least. While still far from commensurate with disease burden, that level of funding would certainly support robust research into pathogenesis and treatments.

The salient point is not, “Hurray, Dr. Koroshetz admits we need $120 million a year.” The takeaway message for people with ME is, “Dr. Koroshetz admits NIH needs to do 20 times better, but nothing is changing.” I’m trying to think of another context where a leader would say we’re falling twenty times short and then do nothing to try to make up the gap. If a company needs to increase its sales by ten or twenty times, you can bet they do something. If a government had a budget shortfall of that magnitude, you can bet they would raise taxes at the speed of light. And remember that Dr. Koroshetz – who is Chair of the Trans-NIH ME/CFS Working Group – chose to kick in only $2 million per year for the RFAs. This low investment from the Chair was not going to be exceeded by any other Institute, thus guaranteeing the smallness of the RFA.

I’m certain that Dr. Koroshetz and Dr. Collins believe they are taking action. But they are taking action that is grossly insufficient for the public health crisis of ME. Dr. Koroshetz said the effort was to “bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH”. This takes time. And we do not have the time. We have hundreds of thousands of Americans who remain confined to their homes and beds for years without end.

In his presentation to the Advisory Council, Dr. Koroshetz also commented on the ME community. He said NIH is:

trying to work with the community which feels terribly ignored and quite angry over this over the last decades but I think we’re making definite inroads there and getting the trust re-built.

A comic book image of a man and woman. The word “lies” is repeated between them.

And here we go again: We’re angry. Just like we make a “huge fuss” and “stir up trouble,” which is “counterproductive.” We are the problem, according to this view.

I reject that view completely and wholeheartedly. People with ME are not the problem. The failure of the research and medical enterprise to take care of people with ME is the problem.

As long as people with ME are accused of being angry and counterproductive, of stirring up trouble and chasing away good scientists, then no one else needs to be accountable for the current situation. If there isn’t enough funding, it’s our fault. If there aren’t enough scientists, it’s our fault.

Casting people with ME as angry while simultaneously blaming us for the current situation does more than deflect blame from NIH. It’s a pretty effective manipulation technique. “You’re angry because there is no funding, but there’s no funding because you are angry.” Such circular reasoning is a trap. Asking quietly and nicely does not force change, and demanding change reinforces the stereotype and status quo.

For more than thirty years, NIH has given people with ME every right to be angry. And I can tell you, having read hundreds of emails sent by the public to NIH officials, we are actually restraining our anger quite well. Describing us as angry creates the impression that we are flooding NIH with vitriol. I have previously fact checked that, and the same was true during the Shorter controversy. ME activists might be vocal, but we have nothing on groups like ACT UP or the heroes of ADAPT.

The longer this frame persists, the more it is reinforced. I suspect the frame is so ingrained at NIH that most people don’t even realize they are looking at us through this lens. It is so ingrained that a few strongly worded emails are enough to make Dr. Koroshetz “pretty upset” with us. Every time that happens, it reinforces the frame still more. However honestly Dr. Koroshetz and others believe in their perception of us as angry, however confident they are that we are keeping scientists away from research, this stereotype remains a serious problem.

Why? Because as long as it is our fault, it is not their fault. Because if it is our fault, then the slow strategy makes sense. It takes time to make “inroads” with such a self-destructive community. By gradually dripping money into the bucket, and letting things progress the way they would have if we had started thirty years ago, then no one has to make waves or spend political capital to fix it.

But people with ME have been abandoned. We have been left to fend for ourselves. Damn right, we’re angry. We have to be. It helps us survive, and it has led to change.

Dr. Collins did not simply wake up one morning and decide to do a little more for ME research. NIH’s current commitment was the result of years of advocacy, and calling attention to the state of the science, and demanding an RFA. After the NAM report, and the P2P report, and the Millions Missing protests, and Brian Vastag’s public letter which was retweeted by pretty much every single science reporter in the United States — after all that, NIH decided to invest a little bit more in ME research. An investment that Dr. Koroshetz admits is minuscule compared to what is required.

At the Advisory Council meeting, Dr. Koroshetz gave all the credit to Dr. Collins, saying:

Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is an area that’s really been completely under-investigated across the country, and Francis [Collins] was really courageous and went out there and said that NIH is gonna change that.

Courageous: a word that means “not deterred by danger or pain; brave.” I don’t see how Dr. Collins pushed through pain or even spent much political capital to help us. To me, the people truly brave and undeterred by pain are the people with ME (and their families, friends and allies). I know a mother of two young adult sons with ME; she is brave. I know another mother who has not disclosed her diagnosis to most of her family; she is courageous. The executive with ME who keeps working is undeterred by pain. The woman who withdraws from her doctoral program with just her thesis to complete is brave in the face of that disappointment and loss. The researchers and clinicians who labor on shoestring budgets are not deterred by the potential danger to their careers. I am writing this blog post, undeterred by the pain I am already experiencing and the post-exertion crash that will follow. The advocates who sacrifice their health and privacy to speak on behalf of all of us are courageous.

Dr. Koroshetz said NIH was “getting the trust re-built.” But how much trust can exist if people at NIH think we are fighting for our lives too loudly? How much trust can exist given the way Koroshetz and Collins blamed SMCI for “stirring up trouble”? How much trust can exist if the response to this public health emergency is a strategy that will take years for tangible scientific progress? How much trust can exist when NIH blames us for the poor funding situation, when they are the ones who control the purse strings?

The bottom line: this perception that people with ME are unreasonably angry and wildly attacking researchers feeds the perception that “Funding could be for naught.” And if there is a perceived risk that funding could be useless, no one is going to invest that funding. This perception places the blame and burden of proof on people with ME. If we do not behave in accordance with Drs. Koroshetz and Collins’ expectations, then we will not be rewarded with funding (as if they have ever rewarded any type of our behavior with funding). Bad advocate, no cookie.

This stereotype leads to and justifies NIH’s current strategic and policy approach to ME: risk as little as possible, cautiously drip in a little more funding, and wait patiently for something to change, some day, far down the road.

Are you ok with that?

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , | 45 Comments

CDC Hilarity

image shows a piece of cake with the layers colored like the American flag

Over the years, I have filed many FOIA requests, and I have learned that it can take a long time to get a response. But CDC takes the cake.

In my experience, all the agencies meet the statutory requirement of “responding” within twenty days, but that “response” is almost always a simple acknowledgement of the request. Getting the actual documents can take months, or more. It’s just part of the process. But even in the context of FOIA, CDC is notorious for its slow responses. And this month, I got hilarious proof of that.

Way back in March 2014 – yes, more than three YEARS ago – I filed a FOIA request with CDC for documents showing how much money CDC contributed to the IOM study, and any communications between CDC and the Office on Women’s Health about the study. I filed identical requests with other health agencies, too. Then I waited.

Responses trickled in, anywhere between one and fifteen months after I filed the requests. But for CDC, I waited. And waited.

Then on June 14, 2017, I received a letter from CDC. But it didn’t accompany released documents. Nope. The letter said:

Your FOIA request is currently estimated at $227.50, which exceeds the $100 maximum FOIA processing fees you are willing to pay. Please know that this is the current estimate and fees could increase due to the amount of time it may take to review any responsive records received.

My immediate reaction to this letter looked something like this:

a seal lies on a beach with one flipper in the air and a laughter-like expression on its face

Friends, I have filed more than 50 FOIA requests over the past few years. Some of the responses have been hundreds or even thousands of pages. I have never, not ONCE, been charged money for those responses. The law allows recovery of fees, and the government notifies you if the search will cost more than a threshold amount. Despite the fact that my requests have sometimes involved lengthy searches, I have never been charged a dime.

It’s almost like CDC doesn’t want to disclose documents. If I were trying to discourage people from filing FOIA requests, I would stretch response times out as long as possible and I would charge as much as possible.

Now, as a former litigator, this kind of thing piques my interest. If finding responsive documents is going to cost more than $200, how many documents are there? What if it is a treasure trove? The stubborn lawyer in me says “call that bluff.” When someone tries to make me go away, I’m going to show up louder and harder. That’s what I’m trained to do.

But at this point, the IOM contract has been over for two years. And I would rather spend my money on an effort that is likely to bear fruit for ME patients, like David Tuller’s work on PACE. Besides, CDC should just provide this information to the public. At a bare minimum, Dr. Beth Unger could provide the dollar figure of CDC’s contribution to the IOM contract. In fact, she could do so quite easily at next week’s CFSAC meeting. Why should anyone have to PAY to get this piece of information?

So as much as it pains me to say this, CDC can keep their documents. I’m not going to pay $200+ to the government for documents that will be heavily redacted and potentially not that much use. I just don’t have the dollars, or the energy.

But thanks for the laugh, CDC.

meme of an angry looking koala and the caption you’re hilarious I’m dying of laughter

(Bonus: my favorite laugh video of all time, so you can laugh with me)

UPDATE: 12:31pm, June 22,2017. An anonymous and generous donor has offered to pay the $227.50 processing fee. I have sent CDC a letter accepting the fee, so now we wait for the documents. Who’s laughing now?

Posted in Advocacy | Tagged , , , , , , , , , | 21 Comments

CFSAC: Second Verse, Same as the First

Another CFS Advisory Committee meeting is upon us. The webinar meeting will be held on June 29th and 30th. And as has been the case in the past, the federal approach to the Committee appears lackadaisical. This bare minimum effort is most evident in the failure to fully staff the committee.

As I noted last December, CFSAC currently has only seven of thirteen members. That’s because the terms of Ms. Collier, Dr. Corbin, Dr. Casillas, and Dr. Fletcher all expired in 2016. In addition, the charter renewed in September 2016 added two new spots on the roster. So there are six empty chairs.

But this is actually not the worst case scenario. Dr. Sue Levine, Dr. Dane Cook, and Dr. Gary Kaplan all reached the end of their terms in May 2017, but they have been extended until November 2017. Clearly this was a last ditch effort to maintain the bare minimum quorum (and save face). Without extension of those terms, CFSAC would have been down to only four of thirteen members.

What about new members? There have been two calls for nominations, one in April 2016 and another in October 2016. Back in September, I reported that some nominations were working their way through the system. Why aren’t any of those nominations approved and ready to go? Beats me. Like I said, lackadaisical.

But new developments show it is worse than that. The four nominations received by CFSAC in response to the April 2016 call were Dr. Cindy Bateman, Dr. Nancy Klimas, Dr. Lenny Jason, and Mary Dimmock. I learned this through a FOIA request. But it turns out Dr. Ken Friedman also submitted a nomination last April. After I reported those four names in September, Ken contacted me and provided proof that he had emailed his nomination. But that information was not included in the FOIA response.

We’ve seen information go missing before, so I filed a new request asking for production of whatever HHS had received from Ken, along with any other nominations that may have slipped through the cracks.

I received a phone call from the HHS FOIA office this month. Despite the fact that I provided proof that Ken submitted his nomination by email, and despite the fact that HHS accepts that proof, there is no record anywhere of his nomination. The FOIA Officer told me that an extensive search was made, including the involvement of IT personnel, but no record of the email exists on government servers. And no explanation could be offered.

The FOIA Officer also told me that to remedy the situation, Ken would be invited by telephone to resubmit his nomination. But when I checked with Ken . . . . you guessed it. He had not received the phone call (he has since resubmitted his nomination anyway).

In a move that can only be described as placating, the FOIA Officer also told me that the nomination process was being changed. From now on, nominees will be told to contact the office if they do not receive confirmation within 24 hours of sending nominations. If they do not receive that confirmation, they will be given another person’s email address for their submissions, with confirmation to follow.

This “improved” process does not make up for the erasure of Ken’s nomination, nor does it guarantee that future nominations won’t digitally vaporize.

And the real question is: why is it taking more than a year to appoint new members to the committee? CFSAC cannot function with only half a roster. Sure, the committee has a quorum but that’s it. Working groups are hamstrung by a lack of committee members, as is the work of formulating and approving recommendations.

So why are we in this situation? Why do we have only half a committee, while nominations are lost or languish in the approval process? Because business as usual for the federal management of CFSAC is like a sloth working at the DMV:


Posted in Advocacy | Tagged , , , , , , | 19 Comments

Guest Post: Sickaversary

My friend, Jenny R, wrote these profound words about her sickaversary.

10 years and 4 days ago today I got sick and never got better. I wrote this to commemorate it:

I want to write something incredibly profound and moving for my 10 year sickaversary. But I can’t. Writing used to be my outlet. It was something that came easily for me and I was proud of my talent with words. Business school beat my affinity for flowery and often turgid prose out of me in favor of conciseness and bullet points. But even so I still retained a nugget of my craft and found ways to enjoy penning a tax research paper in place of angsty poetry.

I could say that it happened the second the virus entered my bloodstream. That a microbe found and destroyed my skill in a summary execution. And in some ways that is true. But it was a slower and (at times) more devastating death. The virus/CFS hijacked my focus and memory immediately. A year later migraines and their medications took and continue to take my words (a condition called aphasia). Then for good measure they took my ability to type or write without angering the ruthless dragon that is the permamigraine (occipital/trigeminal neuralgia). More recently nerve compression from herniated cervical discs and stenosis keep my hands from working properly. But even without these numerous, concrete medical issues, the fact is that I lost faith in my mind a long time ago. That kind of self doubt is as debilitating as my motor deficits.

Because no matter what happened in my life – whether I was single or attached, fat or thin, rich or poor, happy or sad – I had my intellect. Twenty years ago when I graduated from high school I was awarded Most Likely to Run for President and bound for one of the best business schools in the country. I knew I was smart and I felt like because of it endless possibilities awaited me. I was told all my life if I studied hard that everything would work out. Above is a picture of me at 18. Her innocence and joy are hard to look at because I know she would be heartbroken if she knew how it all worked out. That the girl who wanted to major in literature struggles to focus on a young adult audiobook now. That the former CPA who used to run audits can hardly balance her checking account anymore.

This is usually the time where I start to worry I’m alienating people with the harsh truth of living life with a debilitating illness. The part where I list the joys that are still plentiful in my life. The part where I feel pressure to say that I’m grateful for getting sick because it made me see beauty where I once did not. That now I know what really matters in life. So it’s all good.

But I won’t do that this year. It’s been 10 fucking years. I have every right to be angry that I’ve spent 10 years in bed. That I watch my friends and family travel, get married, have kids, excel in their careers, and move forward in life. I feel stuck. Trapped in amber. Preserved at the age of 27 except with more lines on my face, gray hairs, and a crappier metabolism.

Of course I know it could be worse. I am friends with people much sicker than I am. I have friends who have died. I’m a white girl in America with parents who can afford to help her. My privilege abounds. But because of the plentiful cheery disabled person tropes, people’s discomfort with their own mortality and the pain of others, our positive attitude focused culture, and the ingrained socialization women receive to be pleasant and meek, I have subjugated my own grief time and again over these last 10 years. So for today I’m sharing it with you. I’ll resume regularly scheduled Stepford programming tomorrow.

But I’d be remiss to say that my life of perpetual pain, fatigue, and loss is devoid of love and joy. It’s so not. I’ve got a kick ass boyfriend who genuinely enjoys taking care of me instead of doing it out of obligation, friends who never give up on me even when I disappear down a migraine hole for months, a niece and nephew that don’t see a sick person just their purple-haired Aunt Jenny, parents who let me and my cats move in and disrupt their swinging Empty Nest life without hesitation, a little sister who in many ways has become my big sister by taking care of me whether than means pedicures or help with errands, a Bestie/Braintwin who knows Jensen Ackles and the cuddles from Corgis can cure anything, my late babycat Cameron who was always up for spooning and never stopped trying to groom me, and a wee tortie Callie who is perfectly happy to spend her days in bed with me. These people love this Jenny. Even if she is broken.

I want to sum this up with some amazing wisdom I have gleaned from these last 10 years but all I can say is that it really sucks to watch everything you thought made you…well…you disappear into a fog of fatigue and relentless pain. It is devastating to watch what you hoped for the future, in my case a life of professional success, exciting travel with a loving husband, and maybe even a kiddo or two, disappear down the drain. The grief never really ends – it just ebbs and flows.

But it doesn’t mean I don’t have hope, gratitude, joy, love, and even excitement in my life. Doctors have found consistent, biological differences in CFS patients and the questionable studies that relegated it as a somatic disorder that only psychotherapy and exercise could cure are being disproven. I’m going to see the Old 97s play next month and am hoping for a trip to Colorado at the end of the summer to explore canniboid oil for pain relief.

So my great wisdom is that I don’t have to pigeonhole myself as the smiling disabled person who puts everyone at ease and is full of folksy wisdom. But I also don’t have to live solely in my pain, day in and day out. I can be grateful and grieving at the same time. I can look forward to tomorrow while being sad for that hopeful 18 year old girl that didn’t expect this future. To quote the 11th Doctor, “The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things and make them unimportant.” Or better yet, to quote the TARDIS, “[Human beings are] so much bigger on the inside.”

Posted in Occupying | Tagged , , , , , , , , | 6 Comments